Joint Pain & Neuropathy Post Chemo

[sadysue]

I understand that hand and/or foot neuropathy is common and sometimes gets worse after completing chemo. I finished up folfox about three months ago and my foot neuropathy has gotten very bad. The only place that I have feeling is my heels. It's uncomfortable but I can live with it, if necessary. Worse than the foot problem is that I have joint pain that I didn't have previously. It's in my knees, hips, elbows, shoulders/neck area and always painful. I am seeing the onc in a few weeks and will talk to him but am wondering if there is anyone else out there that has developed joint problems post chemo. I walk quite a bit but it doesn't seem to be helping. Thanks for any info!

[waw4]

Yes, post-FOLFOX I developed significant pain in my left hip and right shoulder. Had my hip evaluated by an orthopedist who confirmed there was no actual joint/cartilage damage.

The hip symptoms limit the distance I can walk comfortably and I have limited range of motion without pain in my right shoulder. Generally neither hurts when at rest, although sometimes when I lay on my side I will get a dull ache in my right shoulder. Never experienced either prior to chemo.

[Canadianmom]

My joints also hurt quite badly. I completed twelve rounds of Folfox almost a year ago. The neuropathy was horrible and got much worse for a couple of months after I was through with Folfox. By that point, I couldn't write, do up buttons, put on make up or use cutlery. If I closed my eyes in the shower, I would fall over. I even had numbness and tingling up my legs and buttocks. My lips were tinglingly from it too.
Thankfully, the neuropathy has and is slowly resolving and I am regaining function in my hands and feet. But my joints still ache and are stiff. Those first few steps in the morning are so difficult. My ankles, knees, hips and elbows! I asked my oncologist about it but she did not seem to have any answers. I have read others post the same symptoms here before but I have never heard any definitive cause or treatment.
I would love to know what your oncologist recommends.

[sadysue]

The home nurse that came in to disconnect my 5FU told me that Cymbalta works great for some chemo patients with pain and stiffness, in addition to depression and perihperal neuropathy. I am going to ask the onc about it and post the info he gives me. I also have an appt with my primary doc in June and I will speak to him as well. I have been suffering from depression for several months and am currently on Lexapro but if one medicine, like Cymbalta, can cover everthing, I think it would be worth a try

[Kathryn in MN]

I have stiff sore joints now, but don't know for certain if chemo did it, or if it was natural aging and other issues. My mother has fibromyalgia, and it seems I probably have it now too. My scans have shown arthritic changes over the last 3 years. I did have arthritis in my knees and my big toes at a very young age, but nowhere else. Now I have it showing up in many places. I personally think I may have ended up with these issues eventually anyway, but that chemo accelerated it.

[tmn]

I had joint pain especially in my hips for a few months after finishing chemo but within six months I felt much better and now have neuropaty in my feet but it is very slight and minimised by wearing appropriate shoes and I try to avoid standing for long periods.

[Icesk8tr]

After completing 13 rounds of FOLFOX I have joint pain and neuropathy. My joints ache and are stiff. The neuropathy is in my feet, right arm and hand. I hope this gets better in time

Christine

[cashmere]

I had the same joint pain and stiffness along with severe neuropathy after finishing chemo. I was willing to try anything. I did try Cymbalta and it worked great for the joint pain and stiffness, it didn't seem to do much for the neuropathy but I was also on Lyrica (am to this day). I stayed on Cymbalta for about a year and started to gain weight AGAIN so I weened myself off of the Cymbalta. The withdrawal from Cymbalta was awful, it took about a month and I was pretty sick. I just wanted to let everyone know my experience with Cymbalta, BTW, the joint pain and stiffness never came back.

[StarGirl]

Sorry you are having to deal with this Sady Sue. My oncologist is sending me to PT as my muscles have gotten so weak--do you think PT could help you? Even before my cancer dx I had osteoarthritis and fibromyalgia--think the chemo and surgeries just made those problems worse. Do hope your doctors can make you feel better whether it is via meds and/or some physical therapy.

[SugarBubbie]

I have joint pain and neuropathy from the Taxol (12 tx) and FAC (4tx) which I completed this last November for my breast cancer. These are some nasty chemos. I didn't have it much from my past anal cancer treatments. I do find that benfothiamine (vitamin b-1) has helped me. I've posted about it before on here. I know there is some skeptism from some on here about how quickly it worked for me. I can just honestly say that it does. I originally started with 2x 300mg per day. That helped tremendously and very quickly (just a matter of hours). I am only taking 1x300 mg every other day now. If I forget then I do feel a difference and my hubby notices that I get up a lot slower. I ordered mine online from Amazon and trust the Doctor's Best brand I bought. The b-1 in the drug store is water soluble so it does not work the same.

All I can say is what worked for me. I found out about it from www.thepeoplespharmacy.com. Hope this helps.

[Janine]

I am so glad to have this sight! I've had 34 chemo/radiation treatments last summer for recurrance of rectal cancer, and just finished 12 rounds of chemo 1 month ago. I've been wondering if the side effects are arthritis. This morning I got up for my walk and my joints hurt more than yesterday. This started about 1 week after the last chemo, but gets worse each day. From reading the posts I guess this normal. I was really hoping things would start getting better! Thanks for the posts!

[Ron50]

I had 5fu and levamisole as chemo in 1998. At the time I had no neuropathy. A i regained my health I started walking. I walked at times up to 50 miles a week. I walked every day. At the end of two years I was dxed with acute pancreatitis and subsequently lost my gallbladder. I contiued to walk but I started to notice I was losing feeling in my feet and when I rested after a long walk I virtually siezed up. I became ill again with stomach problems and was initially dxed with stomach ca. Biopsy proved that to be incorrect and the dx was changed to acute ulceration. My doctor gave me a blast for doing so much excrcise. I was dxed with severe psoriatic arthritis and peripheral neuropathy of the feet legs and hands. Subsequent treatments have not helped and in some cases made things much worse. At fourteen and a half years since chemo ,I have neuropathy,psoriatic arthritis,Kidney stones and alkylysing spondylitis. I have refused further treat ment options for the joint and spinal pain as the side effects from the arthritis drugs are as bad as chemo. Ron.

[Guinevere]

I still have some numbness in my toes but it's getting better all the time. I'm about a month out off Xeloda and 7 months out from my last Oxaliplatin infusion.

One thing I noticed is that I would compensate for the bad places on my feet and it ended up causing me to have sciatica. Once I realized that, I just sucked it up, numbed the bad places and tried to walk as normally as possible. I've had arthritis in my hips, ankles and feet since 1984 and in my knees since about 1990 but the joint pain is worse now. Not sure if it's chemo or being over 50 (wow! That's the first time I've written that phrase in conjunction with my age!). The last CT scan showed degenerative disease in my spine and that's new. Not sure if chemo's responsible or not. Guess it doesn't matter since it's not reversable and I just have to deal with it. Can't take anti-inflammatories because of gastric issues though so my treatment options are limited. I'm fallin' apart!!

[shellfry]

I had Oxiplatin for chemo and radiation. One year now post chemo and have had neuropathy since. I'm also diabetic so it's probably perm.
On Cymbalt for a year, it really helps the pain and my hands. I was still having so much problems with my right hip, so my onc. suggested Glucosomene Condroiton (sp?) wow what a difference it has made! I jump right out of bed, no stiffness, yoga is wonderful, I feel great! I don't even care that I can't really feel my feet! I am learning to live with that, throwing away most shoes that slip off without me noticing! It's gotten kind of funny, but I can't risk falling and getting hurt, so I'm replacing slip ons with shoes with straps. I am NED so far a year and loving life!

[Sunwaterandsky]

I spoke to my oncologist today about this very issue. He said that many people with oxaliplatin neuropathy also have joint pain. This makes sense to me, as my neuropathy has been fading, the joint pain is not so severe. Now I am just hoping that it all fades away!